Other problems with the digestion of food and intake of water

  


Other problems with the digestion of food and intake of water

Eating healthy food and drinking are essential for a pleasant life, so this is true as well for Cornelia's.But the genes can have created some hurdles to be aware of. We often talk about the 'tube' from mouth to .... (When you go to the toilet) Cornelia's can have issues in this tube; from the beginning to the very end.Swallowing, Drinking ... Why does the tummy seem to hurt, and why is the stool not ok?These and many other topics about the digestive system will be discussed. And again; we learned so much that most of these issues can be dealt with. Not the least by tips from other parents.

Meet our experts

We are doing our best to invite those from around the world that can give you the insights you hope for. Both professors, teachers, experienced parents or siblings will discuss the topics for the best quality of life possible. Our motto; TOGETHER!

Peter Gillett

Peter Gillett

Peter is a Consultant Paediatric Gastroenterologist at the Royal Hospital for Sick Children, Edinburgh Scotland. His training was in Newcastle and Edinburgh and the Children’s Hospital in Vancouver and took up his current post in 2001. His interests are coeliac disease, upper GI and small bowel disorders, endoscopy and constipation and its improved management, informatics, education and engagement with colleagues and families to make holistic management more consistent and responsive.

He established the SE Scotland regional paediatric coeliac service in 2001 and has been an Advisor to Coeliac UK for over 10 years and sits on their Health Advisory Council. He was a member of the Scottish Government Group developing the Gluten-Free Food Service and was a member of the NICE Coeliac Disease NG20 group, currently chairs the BSPGHAN Coeliac working group and co-leads the Scottish Government new coeliac strategy which aims to provide optimal diagnostics and ongoing management for patients with CdLS.

He has an interest in GI problems in neurodevelopmental disorders and is a specialist advisor to Cornelia de Lange UK and Ireland and the CdLS World Federation and is the UK Medical Director. He was a member of the international guideline group and helped develop the guidelines for management of medical and surgical issues in CdLS published in 2018. His goal is to help improve other health care professional’s awareness of CdLS specific issues and generic GI problems in neurodisability.

Anne-Marie Bisgaard

Anne-Marie Bisgaard

Anne-Marie is a consultant paediatrician specialized in child neurology and neurodevelopmental disorders. She works at Center for Rare Diseases and Center for Rett syndrome at University Hospital of Copenhagen, Rigshospitalet.

She did her PhD within the clinical genetic area in 2007 (The phenotype of patients with submicroscopic chromosomal abnormalities and mental retardation. Description of new microdeletion syndromes.). Since then, her research focus has been on neurodevelopmental disorders, which in recent years mainly has been within Cornelia de Lange syndrome and Rett syndrome and related disorders. The focus is both on the molecular causes and mechanisms for disease and on clinical issues and how to manage these.  

Before then, Anne-Marie did her training at several paediatric departments in Copenhagen and Næstved and at the Epilepsy Hospital in Dianalund.

She is member of the Scientific Advisory Committee of the Danish Association of Families with CdLS and of the Scientific Advisory Council of the International CdLS Federation.

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